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Blood cancer has nearly taken everything from me

Patricia Robinson

Patricia Robinson turns 60 later this year.

No doubt there will be some form of celebration, and husband Michael and son Jonathan will ensure it is a happy occasion.

As ever, such a significant milestone may prompt renewed hopes and aspirations for the future, and reflections on what has happened in the past.

For Patricia, or ‘Trish’ as she is widely known, looking back will sadly also bring back so many painful memories.

It is now ten years since the eldest of her two sons, Christopher, died as a result of leukaemia just a day before he was due to receive a stem cell transplant.

By 2016, Trish herself had been diagnosed with leukaemia, and, unable to cope with the devastating news having already lost a grandson to the disease, her mother committed suicide.

And then, after underdoing her first treatment of chemotherapy, Trish was faced with the loss of the family’s pet dog Mollie, even more poignant than the traumatic loss of any pet as she he had been much loved as a puppy by Christopher.

There are however some positives amid such a cruel and heart-breaking sequence of events which could easily have destroyed those of a lesser strength.

Trish is in remission, and Sunday September 1st, was not only the start of Blood Cancer Awareness Month but also the three-year anniversary of the stem cell transplant which saved her life.

There is also warm and fulsome praise for Cure Leukaemia co-founder Professor Charlie Craddock and his team at the Centre for Clinical Haematology at Birmingham’s Queen Elizabeth Hospital.

“The best there is,” interjects husband Michael, clearly so very grateful that he still has his wife alongside him and that collective strength to take on whatever life continues to throw at them.

And Trish herself remains a generally lively and vibrant personality, even after such a seemingly unending catalogue of personal devastation.

“What else can you do? You just have to keep going,” she says.

She has returned to part-time work with the NHS,  is a regular at her local Nuffield Health and Wellbeing Centre, has been away with friends to Thailand, and enjoys riding her horse Cresta near their home in the village of Cannock Wood, by Cannock Chase.

The family has also has a new pet dog Bonnie, and a stake in a syndicate which owns race-horse Ami Desbois.

So Trish is looking forward, “onwards and upwards”, whilst never forgetting the past and her own battle with leukaemia which began just prior to the Christmas of 2015.

“I was generally feeling unwell, with hot sweats and so on, and at my age – 56 – I just thought I was probably going through the menopause,” she recalls.

“I went to see my GP, and blood tests showed I had a low white blood count, but as he went away for Christmas I started having regular weekly tests just to see what was happening.

“I was referred to the Queen’s Hospital in Burton, where I then had to have a bone marrow aspiration, and by this time the alarm bells were ringing I was petrified as this is where Christopher was started his treatment.

“Eventually I was told the news that we all feared – it was leukaemia – which was obviously a really emotional moment.

“We were told the news on a Friday, and I think I was in shock for all of the weekend which followed.

“It felt like history was repeating itself after what had happened to Christopher, and the first thing I wanted to make sure was that I didn’t go into the same hospitals for treatment as he had.

“Those memories would have been just way too painful.

“We went to the Queen Elizabeth Hospital in Birmingham under the care of Professor Craddock –that turned out to be best decision I ever made.”

It was back in 2008 that Christopher was first diagnosed with leukaemia, whilst he was undergoing a management course at Tesco’s.

He was getting home each evening and falling asleep, often feeling like he was going to pass out just from the exertions of climbing the stairs.

Having gone to see his GP, and discovered a  HB (Haemoglobin) level of 4, he was rushed to hospital for a blood transfusion.

After tests in London, he was then treated at Heartlands Hospital in Birmingham, undergoing his first round of chemotherapy under the umbrella of Professor Muffti from London.

Treatment went well and he was soon in full remission, choosing then to have his stem cell transplant at King’s College Hospital in Brixton.

“One day I got a telephone call from Christopher – he was crying and saying, ‘Mum, I need you’,” says Trish.

“I went down to see him and he wasn’t well at all and very tearful, scared and very sick.

“It was in the middle of a heatwave, and he wanted a lolly, and with there being none in the hospital I went to the shops desperate to give him something to enjoy.

“We would travel down to see him each day.

“His girlfriend Shell visited on the Friday and I went down on the Saturday, ready to return on the Sunday which was a day before he was due to undergo the stem cell transplant which would hopefully save his life.

“Fortunately our other son Jonathan was a match, and so we were both ready to travel down so they could make all the preparations and go ahead with the transplant.

“He took a real turn for the worse, and we received a phone call at 8 o’clock in the morning telling us he had gone into respiratory failure but had pulled through.

“We were told to get down there as quickly as possible, and of course, the train was delayed enroute which was mental torture as we just wanted to be with him.

“We didn’t make it in time, and Christopher died of respiratory failure linked to pneumonia, one of the effects of what he had been through with the leukaemia treatment and having no immunity to fight infection.

“I remember he had asked me to bring him the right shoes for him to go home in when we went back on the Sunday –  now we had to start to plan his funeral.”

 

Christopher passed away aged just 26 on Sunday 28th August, 2009.

“This impacted so heavily on our family no parent should have to bury their child,” adds Trish.

“I was in the pits of despair and over the following years I experienced some of the darkest days in my life.

“Eventually time helps you learn to live with the loss but there still remains painful a massive wound inside.”

So then, six years later, it was completely understandable that the fears and worries that anyone would be experiencing in Trish’s position would be intensified given the grief she was still feeling for her son and knowing the extent of the treatment which lay ahead.

However, before the treatment started, there was one special treat Trish was determined not to miss out on.

“We went to the races,” she says with a smile.

“We had a syndicate racehorse – Ami Desbois – which was running at Aintree in a Novice Chase on the Friday of the Grand National meeting, the day before the big race.

“While I had been in hospital preparing for the treatment one of my doctors from Liverpool had told us about the whole city coming to a standstill and what a great atmosphere it would be.

“Michael was telling me not to be so silly to even think about it given the illness, but I was desperate to get along and enjoy myself.

“After all, I was thinking I may not make it through the other side of this treatment, so it could have been my last chance.

“We all went along to Aintree, and had a great time.”

Ami Desbois finished 8th in the Doom Bar Sefton Novices Hurdle, at odds of 100/1, but heading back into hospital for her treatment to start, Trish was hoping for far more favourable odds upon which to make a recovery.

During the first bout of chemotherapy Trish signed up to clinical trials and was the first patient at the QEH to take part in the M19 trials, relating to different chemotherapy treatment regimes.

She wanted to try and improve research in the same way as Christopher had done, and yet, as the treatment started to make her feel very unwell, that was nothing compared to soon receiving another devastating blow.

“I lost my Mum, just before I was due to go home after the first part of the treatment,” Trish recalls.

“She took her own life, because she couldn’t cope with what was happening to me.

“She was in her Eighties, and was a very strong-willed woman, but she just couldn’t face what was lying ahead.

“Mum lived next door to us as well, and it was Jonathan who found her.

“Very soon afterwards I caught an infection and had to be rushed back into hospital, and it was there that I was writing the eulogy for my Mum.

“Fortunately, I managed to get well enough to be let out in time for the funeral.

“But by this time I was feeling very depressed, bearing in mind everything that was going on.

“The initial chemotherapy hadn’t completely worked, and I still had seven per cent of bad cells, so I was hospitalised and back in for another seven weeks of treatment.

“I couldn’t leave the room due to the risk of infection, and was going stir crazy, and was so reliant on the nurses to help me get through.

“This was the hardest time, and I then contracted pneumonia and needed oxygen, but I was doing everything I could to try and stay positive.

“I made a vow to myself that I had to keep to a routine as much as possible, and so I wanted every day to begin with a shower.

“However ill I was feeling, even if I was really rough, I would have a shower, even on a chair if I had to.

“I couldn’t do my hair by this point as I hadn’t got any, but I would always make sure I had a shower, got my day clothes on, and that felt like I had achieved something as part of that routine.

“I would chat to the chap bringing the papers, the cleaners, and the chaplain – Father Peter – who was a big help to me at this time.

“He would talk about family and other things that were going on and it was just a relief to be chatting to someone about something else apart from leukaemia and the treatment.”

Still though there was more heartache to follow.

The family’s cherished pet Alsatian, who had arrived as a puppy and had been taught all sorts of tricks by Christopher before his death, also passed away.

“Losing Mum had made me angry, but losing Mollie was like breaking the chain back to Christopher,” Trish explains.

Still though, she somehow kept going.

Her brother was not a match for the potential stem cell transplant, and so the search moved to the world bank of donors, and, fortunately, a match in a 19-year-old man from America.

That was good news, and Trish signed up for another clinical trial – Figaro – an intense bout of chemotherapy before the transplant which left her barely able to move for three or four days not to mention the enduring memory that, ‘I thought I was going to die’.

Gradually though, her health improved, and the day of the transplant – three years ago on September 1st – arrived.

“The cells were all contained within a red bag, which had been flown over and couriered across from Birmingham Airport,” she explains.

“I remember having a photo taken with the nurse and the bag which was hopefully going to save my life.

“And from the day I had the transplant, it was generally onwards and upwards, and things started to pick up.

“They told me from the first day that the transplant had 100 per cent taken in terms of the good cells, and I had five weeks in hospital just making sure it was all going to plan.

“There were still side effects from the drugs that I had to take to stop my immune system fighting the donor cells, which made me very sick, but I did always feel safe in the hospital.

“I also had a lot of former colleagues from the NHS come and see me as well, and was able to get about and enjoy a regular treat of a Costa Coffee and piece of carrot cake from the café.

“It is incredible to think that this was all made possible thanks to a person I have never ever met, my donor from America.

“I know there are time limits on when you can get in touch with a donor to contact them to say thank you, but I would love to get that opportunity if he agreed to it in the future.”

Life now, whilst never being able to forget the memories of her own diagnosis as well as the pain of losing her mother and son, has at least returned to some form of normality for Trish, as she marks three years since the stem cell transplant.

She is keen to support Cure Leukaemia to help patients like herself in the future, and would also encourage others to consider supporting the ‘Donate Your Name’ regular giving campaign taking place during Blood Cancer Awareness Month , involving pledging a minimum £5 a month to support the charity.

“How did I cope? Well yes it has been a really difficult time but you just have got get on with it, don’t you?” says Trish.

“I still have bad days, some days I don’t even want to get out of bed, and I have had shingles twice since being in remission, and chest infections take a lot longer to shift.

“We also think about Christopher every single day, and will never ever forget him.

“But I have found the best way to cope is to stay as busy as I can.

“I retired from working for the NHS when I was diagnosed, but have gone back now on a part-time basis.

“I go to the gym with friends and take part in Aqua Aerobic classes, and a few of us recently went to visit our friends Jean and John in Pattaya, Thailand, which was a fantastic experience.

“I was able to ride my horse Cresta again six months after the transplant and she keeps me going, as does the puppy we had just after I had finished the treatment.

“Michael and Jonathan have been wonderful with their love and support – I am told it is so rare for a mother and son to both be diagnosed with leukaemia and as a family we have all had to come through it together.

“I have also had incredible support from my friends, and, the more active I can be the more I can avoid that gap that we all still feel following Christopher’s and mum’s passing.

“I cannot thank everyone enough when it comes to Professor Craddock and his team and all at the Clinical Centre for Haematology .

“The care I received there when going through such a horrible experience was second to none, and that is why I am keen to support Cure Leukaemia.

“I would encourage people to consider supporting the charity if they possibly can by starting some regular giving during this, Blood Cancer Awareness Month.

“Whatever amount people can give a month will have such a major impact on people’s lives and help the medical experts find a cure for all blood cancers once and for all.”

And so on to December, and that landmark birthday.

Hopefully it will bring better times ahead for Trish and her family, as they look forward to a brighter future…